Post-Transplant Rejection Update: 30 September 2020

(I had originally planned to get this entry done over the weekend, but seeing that it was so close to the next lab draw, I decided to instead finish this once I had those results...)

The P.E.T. re-test is completed.

It went pretty much exactly the same as the first test, and the Radiology technician even stated that the images look nearly identical; but that only a Cardiac Physician can accurately assess the images. As I have not received yet another call for another re-test, I will assume that the images were satisfactory.   And just like last time, I got a massive headache from the test [because the isotope/med that is given is a huge vasodilator] and again spent the remainder of the day recovering.

Despite the tiredness that comes and goes, I have been getting my workouts in as much as possible. In fact, I'll do one later this afternoon for the third consecutive time [of every other day]. Hopefully, I can keep going, and start adding more exercises. 

There are no new changes in how my feet are feeling. I fully expect that the next noticeable change will also be a sudden realization that I can feel something new underfoot.

Also, the headaches remain up and down; though I awoke this morning with a good bit of pain.  This isn't surprising considering that my jaw is popping really hard today. So, NTI devices tonight!

I can tell that my Red Count and Hematocrit are down (even before the labs listed below) because I am starting to fall asleep if I just stop moving around; like when I'm on the computer, watching TV or trying to read a book or at least an article. AS I did before my transplant, I don't fight it and just take a nap.

I had another episode of dizziness a couple of days ago. Again, it happened at home, but only last a few minutes. Luckily, these episodes are still few and far between.

Now, the latest labs...most of which are ugly...

29 Sept 20 Labs:

*Creat:   4.44 (+0.36)

*HCT:   31.1 (-1.3) Low

*Hemo:   9.8 (-0.6) Low

*Lymph:   4.7 (-1.3) Extremely Low

*Lymph ABS:   0.3 (-0.2) Extremely Low

*RBC:   3.43 (-0.14) Extremely Low

*WBC:   7.2 (-0.6) IR

*Ketones:   Negative

*BUN:   62 (+4) Extremely High

*CA:   9.8 (NC) IR

*GFR:   14 (-1) Extremely Low

*Gluc:   112

*K+:   4.2 (+0.3) IR

*NA+:   139 (+1) IR

*MG:   2.2 (+0.1) IR

*Phos:   5.2 (+0.4) High

*Prot:   6.9 (+0.1) IR

          NC= No Change         IR= In Range

With just 7 of 17 results being where they should, these numbers are some of the worst I've seen since my rejection episode more than two years ago. I am not dwelling on these labs because I expect them to worsen; however fast or slow that happens. Instead, I am focusing on staying positive, getting my workouts done,  getting as much accomplished every day as I can, and working on keeping my mind challenged through some games, this blog and doing more puzzles. 

Again, the goal is to get as far as I can without going back on dialysis.

Also yesterday was the second of the two September infusions of Belatacept. (Remember, because I had the first infusion on 01 Sept, and the infusions happen every twenty-eight days, yesterday, 29 Sept was the second infusion). Because of the two cannulations for the PET tests, my arm was difficult to stick, and so is a bit bruised up today. The infusion itself went great, and there were no other complications.

Lastly, the big toe on my L foot has not gotten better, despite my daily efforts. So, I have an appointment next Monday, 05 October, with a Podiatrist. It is time.

Anyhow, between the existing tiredness, the meds I took for my headache, and my needing to get some lunch, this will be wrapped up in short order.

I hope that all of you, my readers, are healthy, and safe from the Chinese Virus!

Good Health to All!

ScottW

Post-Transplant Rejection Update: 19 September 2020

 I had a hectic week, so let's get to this...

Monday, 14 Sept, I went in for my scheduled cardiac P.E.T. Test (Positron Emission Tomography) at 945a. I was cannulated in my L arm, taken to the scanning room, then placed on the table with my arms above my head. The scanner first took a series of pictures for a baseline. Then, I was given 'radioactive tracer' that increases your heart rate so that the scanner can examine your heart and blood flow under stress. Both the first and second series of scan lasted seven minutes. The hardest part of this test was keeping as still as possible in an uncomfortable position.

The last time I did this test was a day after leaving the hospital for my Renal Occlusion. I was still healing from the transplant, had zero cardiovascular ability due to years of declining health, and had undergone a score of some very painful tests {in hospital} the previous week.  As a result, that test was far more difficult because 1) I was already in a lot of pain, and had a bad headache on top of that.     2) Because of my non-existent CV shape, I had an extremely difficult time controlling my breathing so that I felt like I could hardly breathe. Those seven minutes were brutal!

This time around, after that med was injected, I could feel my heart rate increase, but I was easily able to control my breathing, and the time passed quickly with no distress on my part. I didn't realize this until after the test was over, and knew that my walking better and working out helped me to gain back some of my cardiovascular strength. 

Following the test you are given a can of Coke (or some other caffeinated beverage) because the caffeine helps to counteract the tracer; plus a snack, as well. The only real side effect of this test is that is gives me a massive headache that hit suddenly, and stay for hours. So, I spent the remainder of the day recovering.

Tuesday was labs, followed by Chiropractic (with acupuncture). The remainder of the day was shopping for supplies and misc. errands. As far as the acupuncture, there is now steady progress in healing the Neuropathy in my feet. I am now feeling textures through my feet, variations in floor temperature, and, when walking at a park yesterday I was walking barefoot (as normal) to feel the coolness and softness of the grass. I came upon a path to cross over that had some gravel, twigs, etc on it. I started across without thinking and suddenly realized that the things I was stepping on actually hurt my feet! This is HUGE! I haven't felt something like that in about eight years now! IF all goes well, and I can continue getting the acupuncture done twice each week, I may just end up back in shoes by next Spring or Summer. (Crossing my fingers!)

15 Sept 20 Labs: 

*Creat:   4.08 (+0.48)

*HCT:   32.4 (-0.4) Low

*Hemo:   10.4 (+0.2) Borderline Low

*Lymph:   6.0 (-0.8) Extremely Low

*Lymph ABS:   0.5 (NC) Very Low

*RBC:   3.57 (NC) Extremely Low

*WBC:   7.8 (+0.8) IR

*BUN:   58 (+1) Extremely High

*CA:   9.8 (NC) IR

*GFR:   15 (-3) Extremely Low

*Gluc: 109

*K+:   3.9 (-0.2) IR

*NA+: 138 (-1) IR

*MG:   2.1 (-0.1) IR

*Phos:   4.8 (+0.6) IR

*Prot:   6.0 (-0.1) IR

*Ketones:   Negative

*Parathyroid Hormone--PTH:   34 (Last was 108 in March 2020)

               NC= No Change          IR= In Range

These labs are becoming normal; which is terrible on some, good on others. There really isn't anything outstanding--or surprising--to discuss.

I am now including Ketones from the Urinalysis. Ketones in urine are key indicators of Diabetes, so this is measured every time as Renal failure can cause Diabetes. As to what that cause and effect is, I do not know. I will do some research to explain it on an upcoming entry.

Also, I will no longer report the Neutrophil results because, with the Transplant rejecting, these values are no longer relevant enough for me to include them here.

Lastly, my Parathyroid surgeon ordered a six-month PTH test. This number fell drastically from my previous test, and is in fantastic shape! Our efforts with daily Calcium intake is working excellently.

Next, on Wednesday I received a call from the Radiology lab where I did the PET test. Apparently, the imaging software that compensates for normal breathing motions was not working properly, so I had to reschedule the test for this upcoming Thursday, 24 September. (Yipee!)  :o)

Also that day, it was a long day of grocery shopping, followed by lugging it all upstairs, and getting it put away. On top of that, the day was hot (which my kidney does not like), and the A/C in our car is out, so I was in heat most of the day. I was drained when all was said and done.

On Thursday, I had an appointment at the Kidney Clinic. There, I finally heard a good explanation of just why my kidney is not working well with my body. The doctors have finally figured out that the "Ejection Factor" of my heart, and its ability to properly perfuse the kidney is too low. A normal Ejection Factor is somewhere between 65-80. Mine is around 50. This lack of blood flow is apparently causing all of the issues.

Luckily, it CAN be corrected by weight loss and exercise; two things I am already working on. In essence, the greater the body mass, the lower the Ejection Factor of the hearty. Hence, the lower the body mass, the better the perfusion of the body; and particularly for me, the kidney. If I can improve the Ejection Factor of my heart, my next Transplant should last longer.

Then yesterday, I helped with more errands that took most of the day--again, in a hot car--which left me drained. The whole week was far too busy, and my body is actually aching from the busy week. I am better today, but still tired. Another day should be enough to get me going again.

On the headache front, I am still getting slow improvements from the acupuncture. Most daytimes I am taking only Excedrin--or none at all--but as night comes on, the headaches start ramping up from a day of stressing the jaw through normal everyday activity. I usually have to take a T3 in the evening, but not always in the middle of the night. In fact, over the last four nights I have gone all night without any additional meds. These breaks from the TMD headaches are not consistent, nor predictable, but every time I catch even a half day headache free, is a wonderful thing!    Progress!

My energy has been like a sea tide...waning and waxing. With my RBC's down, this is no surprise. I conserve my energy for cooking, as well as household chores. Every passing day seems to bring a little more fatigue that I must fight through to stay active and productive.

As of now, I have no sustained Peripheral Edema. To prevent this in my legs I am keeping them elevated at every opportunity. My weight has remained hovering between 119.5 Kg and 120.5 Kg. Because of my hectic week, I have not worked out in about seven days. IF I feel up to it, I will do my exercises tomorrow.

So, I'll leave things there. This coming week I have two Chiropractic/Acupuncture visits, as well as the PET retest on Thursday.

Until next time,

Good Health to All!

ScottW

Post-Transplant Rejection Update: 08 September 2020

 I know that I missed getting this entry done last week, but once I explain why, you'll understand.

Two weeks ago was uneventful, aside from my twice-per-week chiropractic adjustment and acupuncture. My headaches were pretty much status quo.

Last week started with a visit with my local Nephrologist. We discussed everything that the Kidney Clinic is doing, and how that ties into his efforts on my part, and when to expect to take over my care full-time [as per Clinic instructions]. Also, upon seeing my daily vitals sheet, he increased my Clonidine intake from 0.1 mg 3x/day to 0.2 mg 3x/day, and put me back on Sodium Bicarbonate tablets to help reduce acid imbalances in my stomach which might cause any increasing nausea.           I'm taking two 325 mg tablets twice each day. We also discussed upcoming dialysis, my peripheral access, needed med refills etc. 

Finally, I asked about the possibility of have a 'port' installed for better, more reliable vascular access. My doctor explained the placement of ports ( on the       R upper chest with the line going to the L Carotid), as well as the risk of infections, risks of damage to the port, etc. After his thorough explanation, I decided against getting a port.

It was a good visit, and we have a good plan moving ahead.

Part of that plan is to contact my Vascular Surgeon to have my still-working Loop Graft looked at to determine if it can be salvaged, or whether a new one is needed. The only option that my Nephrologist is aware of that could save the Loop Graft is by ballooning it, much like an artery would be opened. We'll just see...

Now, the reason I am so delayed in getting this entry written.

I have been on the higher dose of Clonidine (0.2 mg) before; but it has been a long while. When I started back on the higher dose, I was hit with excessive sleepiness. I remembered that Clonidine itself can cause sleepiness; but when I was on it before, my body was adjusted to the med. So, I spent all of last week (Mon. evening through Saturday afternoon) sleeping a lot! More so on Tuesday, Wednesday and Thursday; but by Friday, the sleepiness was markedly decreased. As of this writing, I am still getting tired from the med, but for the most part, I am carrying on as usual.

Also because of the sleepiness, I did not work out at all last week. I simply did not have the energy. Then yesterday, I noticed that the big toe on my L foot was swollen and red. I hadn't hit it on anything, dropped anything on it or caused any other type of trauma that would make it swell up and become sore. Plus, I started seeing some weeping of clear fluid from beside the outer part of the toenail. So, I've been soaking my foot in an Epsom salt bath two times each day, and covering the toe at night with a loose gauze bandage. If the toe is not markedly better within a few more days, I will go see a doctor about it. 

My weight has been fairly consistent; currently hovering between 119.6 Kgs and 120.5 kgs. For now, my kidney is excreting all of the fluids I take in every day. I don't know how much longer this will last, but I'll gladly take however long the kidney holds on.

The acupuncture is making more headway with the neuropathy in my feet. I noticed late last week that I now have areas on the bottom of my R foot that I can actually feel for the first time since about 2013. These areas are around the front of the ball of the foot, the underside of the R edge of the foot, and underneath several toes.  Though progress in healing is slow, I am regaining feeling in both feet, and reducing the burning sensation.

Plus, when the doctor is putting in the needles on my feet, there are now locations that actually hurt slightly when the needles are inserted. This is a great sign that the nerves are finally healing!

Next, my latest labs...

01 Sept 20 Labs:

*Creat:   3.60

*HCT:   32.8 (-1.9) Low

*Hemo:   10.2 (-0.5) Low

*Lymph:   6.8 (-1.3) Extremely Low

*Lymph ABS:   0.5 (-0.1) Very Low

*Neut:   75.5 (+0.3) High

*Neut ABS:   5.3 (NC) IR

*RBC:   3.57 (-0.22) Extremely Low

*WBC:   7.0 (-0.7) IR

*BUN:   57 (+10) Extremely High

*CA:   9.0 (NC) IR

*GFR:   18 (NC) Extremely Low

*Gluc:   112

*K+:   4.1 (+0.3) IR

*NA+:   139 (+1) IR

*MG:   2.2 (-0.1) IR

*Phos:   4.2 (+0.6) IR

*Prot:   6.9 (-0.2) IR

            NC= No Change         IR= In Range

With my labs ranging from great to terrible, I will probably now focus only on a few key results.

First, the electrolytes. Highlighted in blue, these are highly important as I move forward. They tell me how well the kidney is maintaining the proper water/electrolyte balance in my body.  As of now, these all look great!

Second, all things pertaining to Red Blood Cells. All of these results are down; the RBC's significantly lower. If this continues, I can foresee another Aranesp shot in my future.

Lastly, my immune system continues to struggle; which makes what is happening with my toe so concerning. Any infection could spread rapidly, which is why I am paying attention to it all day.  

All of the other labs show now usual results.

Also last Tuesday was my latest infusion of Belatacept. Aside from a good bruise on my L arm, the infusion went off without a hitch. And, September sees my having two infusions, as the next one is scheduled for the 29th.

I am going to end this entry here. That Clonidine is kicking in and my brain is starting to feel tired.

The only upcoming appointments I have right now, is at the Kidney Clinic on the 17th.  Plus, my next round of labs are next Tuesday.

Until the next time...

Good Health to All!

ScottW

Post-Transplant Rejection Update: 21 August 2020

My apologies for this update being so late! It was not intentional, nor neglected in any way. I had a number of things happen and come up that interfered with my ability to get this typed up.

So, let's start with the initial Pre-Transplant Orientation...

As I stated earlier, due to the Wuhan virus, this first step in getting me relisted was exclusively via video conference. The order of the day was the following:

  -Education (About Transplant)

  -Living Donor Information

  -Speak with a Surgeon

  -Social Worker Interview

  -Financial Planning

  -New Pre-Transplant Coordinator

  -Clinic Nephrologist

  *Did NOT meet with Pharmacist

The day went well, and quickly--as anticipated--because of my prior transplant workup. In all, it still took five hours to get through as the various Clinic personnel had to cycle from patient to patient; and for me, with all of my established history, most visits were relatively brief. In summary I am initially being listed as a "Status 7" which means inactive but accumulating time. Once I start dialysis, I will be converted to "Status 1" which is active on the list, and eligible for transplant.

Unlike any first-time patients, I have only a few tests to do which are: PET Test (Cardiac), Walking Test, Bloodwork (extensive), Dental Clearance and an updated Colonoscopy. Plus, I need to update my Hepatitis B inoculation.

As I had previously undergone a Cranial MRI (prior to first transplant), I can forego this, and the Clinic will obtain those records.

I have already done the bloodwork during my most recent labs, as well as the walking test; which I did exceptionally well. I already had the updated Colonoscopy in the works, which leaves only the PET Test, Dental Clearance and Hep B. I am currently getting those scheduled, as well.

Lastly, I need to lose an additional 20 pounds (about 9 Kgs) in order for my BMI to get beyond the borderline it is now on for surgery. My target is 107 Kgs, or about 235 pounds.

18 Aug 20 Labs:

*Creat:   Unknown

*HCT:   34.7 (+1.5) Low

*Hemo:   10.7 (+0.4) IR

*Lymph:   Unknown

*Lymph ABS:   Unknown

*Neut:   Unknown

*Neut ABS:   Unknown

*RBC:   Unknown

*WBC:   Unknown

*BUN:   47 (-11) Extremely High

*CA:   9.0 (-0.4) IR

*GFR:   18 (+2) Extremely Low

*Gluc:   115

*K+:   3.8 (NC) IR

*NA+:   138 (+2) IR

*MG:   2.3 (+0.1) IR

*Phos:   3.6 (-1.0) IR

*Prot:   7.1 (+0.2) IR

          NC= No Change     IR= In Range

I do not know why the missing lab values are not available. It could be that I just cannot see them from this particular draw. However, with the BUN lower and the GFR higher, it can be safely assumed that the Creatinine came down a little; which is good.

Also, on this lab visit, I had an extra 15 vials of blood drawn for that additional bloodwork. Of what I can access, there were at least 60 other tests done beside my normal labs. I won't even begin to pretend I understand them!

The acupuncture is making more progress against the TMD headaches. This week, following my Tuesday appointment, I have had three straight nights that I did not take any T3 in the middle of the night. Now, not taking these meds has happened before, but only sporadically. To have three consecutive nights of no meds is great! Plus, on several daytimes I am taking only Excedrin to combat any small headaches. However, the evenings are seeing the TMD manifest itself with intense pain. I use the T3 once, maybe twice, and that is all.   So overall, there is definite progress.

My workouts are sporadic. Due to the aforementioned busy week, I did not get a workout done for eight days. However, once I did, the effort was easier than I had expected after such a long layoff. This week I have done two workouts, despite being tired. Plus, I am very close to breaking off the rowing exercise on its own day. One or two more workouts should be enough to do that. 

There have also been a couple of days that saw me just feeling lousy; like I did when my own kidneys were dying. Each time I bounced back the next day. 

Also, over the previous week, I had the unhappy fortune of developing a cold. That added to my tiredness and the difficulty of busy days. The cold is now complete, and my sinuses are clearing out which is always fun...

That appointment with my Nephrologist was a bust...because I spazzed...big time!

Though I knew the date, and had a reminder from the doctors' office, for some reason I had it in my head that the appointment was on Tuesday--the day I always have his appointments on. Plus, this appointment was made over the phone, and I did not bother to look at the day of the week. Additionally, I failed to look at any calendar date anywhere...on any device, so I did not see that my brain was mistaking the dates and days. As a result, I missed the appointment...on Monday.  I only realized this when I received a call on Monday afternoon asking to reschedule. (Doh!!!)   The new visit is for MONDAY, 31 August.

The slow changes in the appeal of various foods continues. I've been eating things that have not been a problem since my transplant, and suddenly just know that I am struggling to eat it because it simply wasn't appetizing. Luckily, this only involves a few easily replaceable things...so far.

I had another episode of dizziness; but not as severe as the first, and not as long. Plus, I have started having diarrhea again, as well as nausea in the middle of the night; which is such fun!  :(       So far neither are consistent. However, these are a definite signal that the kidney is struggling even more.

My fluid intake continues apace of expectations, and I am getting rid of everything I take in. In fact, I am consistently back under 120 Kgs once more. 

With my workouts, my energy level is up, overall. This takes into account the tiredness I feel from the advancing kidney issue. There are days that I have zero energy--as mentioned--and I am finding myself starting to take more naps during the daytime, despite having gotten some good sleep the night before.

So... a lot happening, and the Signs and Symptoms (S/S) of advancing renal issues will worsen as we go along; however quickly or slow those may happen. Personally, I was hoping to go a few more months before seeing these, but it is what it is, and getting frustrated will not help me whatsoever.

I think that that is everything. If not, it is enough for now.

Right now, I do not know if I'll get another update done before 02 September as my focus will be getting everything I need to do for Pre-Transplant scheduled, and getting to any new appointments. 

So, until next time...

Good Health to All!

ScottW

Transplant Rejection Update: 08 August 2020

I have had an unexpectedly busy week, so let's get started with labs; including those from last week...

28 July 20 Labs                                 04 Aug 20 Labs

*Creat:   4.23 (+0.34)                      *Creat:   3.88 (-0.35)

*HCT:   35.5 (-0.9) Low                   *HCT:   33.2 (-2.3) Low

*Hemo:   11.1 (-0.2) IR                   *Hemo:   10.3 (-0.8) IR

*Lymph:   7.4 (+0.9) Very Low          *Lymph:   8.1 (+0.7) Very Low

*Lymph ABS:   0.6 (+0.1) Very Low   *Lymph ABS:   0.6 (NC) Ext. Low

*Neut:   76.1 (+0.5) High                  *Neut:   75.2 (-0.9) High

*Neut ABS:   6.0 (-0.2) IR                 *Neut ABS:   5.3 (-0.7) IR

*RBC:   3.91 (+0.05) Ext. Low           *RBC:   3.65 (-0.29) Ext. Low

*WBC:  7.8 (+1.3) IR                       *WBC:   7.1 (-0.7) IR

*BUN:   60 (+7) Ext. High                  *BUN:   58 (-2) Ext. High

*CA:   9.7 (+0.3) IR                          *CA:   9.4 (-0.3) IR

*GFR:   15 (-1) Ext. Low                    *GFR:   16 (+1) Ext. Low

*Gluc:   117                                      *Gluc:   108

*K+:   3.8 (-0.2) IR                           *K+:   3.8 (NC) IR

*NA+:   138 (+3) Low                        *NA+:   136 (-2) Low

*MG:   2.4 (+0.1) IR                          *MG:   2.2 (-0.2) IR

*Phos:   5.0 (+0.2) IR                         *Phos:   4.6 (-0.4) IR

*Prot:   7.2 (+0.1) IR                         *Prot:   6.9 (-0.3) IR

             NC= No Change     IR= In Range

Once again, aside from the Creatinine, BUN and GFR, my labs are somewhat stable; though definite chinks are appearing in the Hematocrit, RBC and Magnesium. These additional variations are expected to increase across the spectrum of my lab results.

The acupuncture is finally beginning to break through the muscle stress of the R jaw joint. This past week (starting 27 July) I had the treatment twice. After the first one I had a severe headache, but managed to keep it from exploding. After the second, the headache was bad, but never moved into the severe territory. 

This week, at my first session, I asked my acupuncture guy to place needles across the top of my head from jaw to jaw. After this I again had bad headaches, but also a day that the pain was minimal, and I took only Excedrin to tamp the pain down. Then yesterday the same needle placement was used. Though I had a bad headache yesterday and during the night, I awoke with no headache at all!

PROGRESS!

I know that this success may only be temporary because as I get sicker, and I start vomiting, and the chemical imbalances kick in, that the headaches will increase. However, the acupuncture is at least helping to minimize the overall severity and constant, unabating nature of what I used to call the "kidney headaches." 

One week ago (on 01 August) I had my first day of feeling lousy. It was the same thing as the last time...feeling like you have the flu, but without the temperature spike. It wasn't severe; but it was enough to lay me up for the day. I got nothing accomplished aside from cooking.

However, it was completely gone the next day, and has not yet returned.

I have also started having slight changes to my appetite and overall appeal of some foods. It was a subtle change that I only just noticed a few days ago; but which my wife stated that she saw it happening over two weeks ago. This too will worsen as time goes by, but at least I know that its coming on this time.

My sleep has been good, overall, with only a couple of nights that found me awake for more than just emptying my bladder.

My dreams remain under my control, which is excellent!

As far as my weight, I did  go back above 120 Kg's, but have been vacillating between 119.6 and 120.7 Kg's. On Thursday I ended up gaining 1.2 Kg of water weight. I felt stretch in my abdomen. So yesterday (Friday) I took 30 mg of extra Torsemide to get rid of that fluid. This morning I weighed in at 120.4 Kg, a 1.2 Kg loss. 

I had my August infusion this past Tuesday. Aside from the "stick" (canulation/venipuncture) being troublesome--NOT a surprise give that I have only one section of my L arm to use--and leaving a nice deep tissue contusion, the infusion went well.

I think that I will stop here because I need more to discuss in my next entry.

Coming up this week, I have my initial meeting with the Transplant Committee for getting re-listed. This happens on Monday the 10th, and because of the pandemic, will be exclusively via teleconference. The meeting will last for at least five hours; possibly longer. As always, I will let you know how this goes.

So until later in the coming week...

Good Health to All!

ScottW 

Transplant Rejection Update: 30 July 2020

(**Sorry everyone...I was rereading this post today and saw that some text was inexplicably dropped from what I had written. I did my best to remember what I had stated yesterday when I composed this entry.)

I was looking to post my labs results from this past Tuesday, but cannot access the website today. I remember a few of the major numbers, and will give them here; but will have to include the labs on my next posting.

*Creatinine:   4.34 (?)

*GFR:   15

*BUN:   60

All three of these numbers are, well, terrible. However, I do remember that the rest of my labs were actually pretty good. So again, a mixed bag of results.

Also, my last Allosure test [that I had taken on 14 July ?] came back exactly the same as my first test...  practically non-existent at .012%.

I have scheduled my [new] initial visit with the Transplant Committee. The all day visit will be on Monday, 10 August. Because I have been through all of this before, and know pretty much everything I need, my new Pre-Transplant Coordinator stated that my time that day could very well be shorter than everyone else who is being evaluated. 

I have continued my Bowflex workouts every other day, except in cases of severe headaches. I am now at the point that I am starting to burn fat on my "off" days, and recently broke down past the 120 Kg barrier that I have struggled to get to ever since my weight suddenly, inexplicably rose over and over again during a relatively short time span. That was over two years ago.

I have been in the mid-119 Kg's for five days now; almost making the weight a trend. If I can at least maintain at this weight for another few days, I will consider the weight loss to be permanent.

On my workouts, I am up to 50 pounds on each arm, and do my rowing at 45 reps, leg presses at 50 reps, and the other arm exercises at 50 reps each. Plus, I have added bicep curls at 25 pounds, doing 25 straight reps on each arm.

On the seated rowing, once I get to 50 reps at 50 pounds, I will add five additional reps; get comfortable there, then add five more reps for a total of 60 reps. Once I am comfortable there, I will separate the Seated Rowing from the rest of my workout, doing it every other day (on the non-workout days). I will actually drop the weight to a level yet to be determined, but increase my total reps. My goal here is to do the seated rows for 30 minutes straight; then work up to a full hour. This will get my cardiovascular exercise in several days each week, in addition to the upper body workouts an equal number of times.

Of course, this entire plan hinges on how I am feeling, and the speed at which I begin to feel worse as the rejection continues. Even then I am hoping to do as much as I feel up to.

The TMD in my R jaw joint is fighting back hard against the acupuncture. Following each of the last three treatment sessions, I have had a terrible headache that evening and all though the next day! Each time these headaches increased that did so rapidly, going from a 5-6 up to a 10 within and hour; then staying there no matter what meds I used, how much sleep I got, how much food I ate of how much I just did nothing. Those muscles have become so stressed again that they are doing what they did when I first began treating the TMD back in 1998...refusing to relax. This will not deter me however, and I will continue to get the acupuncture, and force the joint muscles into submission. 

Also on the acupuncture, the neuropathy in my feet seems to be getting better, but very slowly. I occasionally have a sudden sharp nerve pain in a toe, on the ball or arch of my feet, or just notice more of a tingling in certain areas than the burning that has been occurring since 2012. So, definite progress there; even if it is slow.

I had my first episode of dizziness on Tuesday. Always just happening out of nowhere, I had just returned from my lab draw and was unlocking the door into my house when it hit. While disconcerting, the dizziness was not so severe that I had to sit down, I did have to lean against the kitchen counter until it had passed; which took several minutes.

In general I am feeling OK. The headaches are, overall, manageable; my appetite is good; my energy level seems to be holding; I do NOT feel unwell at all; while I do smell ammonia on occasion, it is not yet regular or constant; my daily urinary output remains consistent and clear; but my twice-daily vitals are usually high.

Anyhow, that's all I have for now.

Next week is an unscheduled lab draw--my request; in order to have fresh labs for Infusion day. Also, I have my August infusion of Belatacept, which will be on Tuesday, 04 August, as well. 

Until next week then...

Good Health to All!

ScottW

Transplant Rejection Update: 17 July 2020

It is finally official...

But first, after a rough week with terrible headaches, poor sleep and excessive summertime heat that leaves you drained any time you need to get outside, I can finally get caught up.

Let's begin with the past two weeks of bloodwork...

07 July 20 Labs                                 14 July 20 Labs

*Creat:   4.36 (+0.26)                      *Creat:   3.89 (-0.37)

*HCT:   35.2 (+1.6) Low                   *HCT:   36.4 (+1.1) Low

*Hemo:   10.9 (+0.2) IR                   *Hemo:   11.3 (+0.4) IR

*Lymph:   6.4 (+2.4) Very Low          *Lymph:   6.5 (+0.1) Ext. Low

*Lymph ABS:   0.5 (+0.2) Very Low   *Lymph ABS:   0.4 (-0.1) Ext. Low

*Neut:   75.5 (NC) High                    *Neut:   77.1 (+1.6) High

*Neut ABS:   6.2 (-0.5) IR                 *Neut ABS:   5.0 (-1.2) IR

*RBC:   3.88 (+0.11) Ext. Low           *RBC:   3.96 (+0.08) Ext. Low

*WBC:   8.2 (+0.3) IR                       *WBC:   6.5 (-1.7) IR

*BUN:   57 (+8) Ext. High                  *BUN:   53 (-4) Ext. High

*CA:   9.8 (NC) IR                             *CA:   9.4 (-0.4) IR

*GFR:   14 (-1) Ext. Low                    *GFR:   16 (+2) Ext. Low

*Gluc:   109                                      *Gluc:   107

*K+:   3.9 (-0.1) IR                           *K+:   4.0 (+0.1) IR

*NA+:   136 (-2) Low                         *NA+:   135 (-1) Low

*MG:   2.1 (+0.1) IR                          *MG:   2.3 (+0.2) IR

*Phos:   4.8 (-0.2) IR                         *Phos:   4.8 (NC) IR

*Prot:   7.1 (+0.2) IR                         *Prot:   7.1 (NC) IR

             NC= No Change     IR= In Range

Everything in red is concerning.

Why? Because they are all key indicators of worsening issues with the kidney.

The rest of my labs are decent. There really isn't anything too concerning with the majority of my labs.

With this weeks' results, I received a call from one of the doctors at the Transplant Clinic to tell me that they are placing me back on the Transplant List.

This  decision was not unexpected; though I was hoping that it wouldn't happen  until the end of the summer.

As soon as I receive--then fill out--the starting paperwork, the process to be re-listed begins. I will have to do all of the clearances once more; which will take time with this whole pandemic going on.

These include:

     -Dental

     -Cardiac

     -(For Men) Colonoscopy

     -Psychological, etc.

My status on the list will start on the very bottom. The current wait time in my area for a renal transplant [for my blood type] is 3-5 years. This is actually longer than my first trip on the list, being 2-2.5 years(though because of UNOS changes, it ended up being just under  fiver years).

In discussing possible dialysis, I will not start this until one of two things happen...either my electrolytes are completely out of whack, or I am feeling so lousy that getting dialysis would be a relief. We'll just have to play that call by ear.

In the meantime, until I feel lousy, I will be under the primary care of the Transplant Clinic. Once I feel bad enough to be on dialysis, I will be under the primary care of my Nephrologist. 

Also, I will have two Coordinators at the Transplant Clinic; my existing one for post-transplant, and one for pre-transplant. That will be weird as I try to keep all of the existing and new information straight and distinct from one another.

With the kidney still chugging along (despite the body not communicating with it very effectively), it could be several months before I start struggling. I am hoping that I can go long enough on my kidney that any time I have on dialysis will be brief.  Unfortunately, hope and reality are often two separate and distinct things. 

This is just a wait and see game now.

Assuming I must start dialysis, I will need to have my artificial graft resected, as I have previously discussed. Though still running, the loop graft is greatly weakened, so hemodialysis would be ineffective as the volume is just too inadequate. The healing from any surgery will take a minimum of six weeks; which has to be factored in to any timeline because I do NOT want another Central Line in my chest!  Assuming I have to redo the graft, it could be in the Fall, or later. I will let you know when it happens.

As I noted in the intro, my headaches have been terrible! Both TMD, non-TMD headaches are now in play. Over the past week the pain has averaged a solid 7 out of 10. My med usage is up as a result. It is not much fun with my head these days...

To combat this, I have been getting acupuncture on my jaw twice each week for the past four weeks. I will continue this until the end of July, when I will reduce that to once every week.  Also during these sessions, I have getting a chiropractic adjustment (including on my jaw), as well as acupuncture on my feet to help further heal the neuropathy.  So far, my jaw muscles are fighting back, which I full expected due to what they did when I first treated the TMD with the NTI devices back in 1998. The muscles fight back by [temporarily] increasing their tension until either I stop the efforts, or they finally relax. How long this takes is a definite unknown.

The non-TMD headaches are caused by the ever-shifting body chemistry caused by the body fighting against the kidney, as we've seen since last winter. Getting these to settle down is a total unknown. I honestly don't know if they even can be minimized.

In regards to the effort to reduce the headaches overall...I will just be happy if my head isn't intolerable while I await another kidney.

I continue to get in my every-other-day workouts done. I have had a couple of days that I had a struggle getting started because I was unduly tired. However, I just made the decision to start, and I ended up with a good workout.

During that call from the Clinic, I was told that my body needs more sodium. That's all well and good, but for someone like myself who does not--ever!-- put salt on foods, and actually detest too much salt in a recipe, just how am I supposed to increase my sodium intake? I have not figured that one out yet, so it will be interesting to know what solution I come up with.

So, that's my big news! 

Like I said, it was not unexpected; but still a bit of a gut-punch nevertheless. 

For now, I will be doing my labs every other week, which means that my next blood draw will not be until 28 July. I may or may not get another entry done before that date; it just depends on how I am feeling, anything new, etc.

In the meantime...

Keep yourselves and your family healthy by doing what you must to avoid the Wuhan/Corona/Wuhan/Covid virus. Please wear a mask as asked, and practice social distancing. Wash your hands frequently, and wash all clothing immediately upon return home from any outing. Remember, all of these precautions are only temporary, and are not difficult to do.

Stay safe everyone!

Good Health to All!

ScottW